Rare disease researchers, clinicians, patient advocates and data experts are invited to help shape four new IRDiRC activities linked to the new IRDiRC Roadmap, with applications closing on 20 February 2026.

IRDiRC launches call for experts for four new rare disease activities

The International Rare Diseases Research Consortium (IRDiRC) has opened a call for experts to support four new activities spanning digital innovation, care coordination, and better use of data and registries. This matters for people living with a rare disease because clearer guidance on data, endpoints and models of care can support more efficient, inclusive research and, over time, better and more equitable care pathways.

As ERDERA supports the IRDiRC Scientific Secretariat, this call is also an opportunity for the wider rare disease community to contribute to international alignment and practical expertise that can accelerate progress across borders.

What IRDiRC is looking for

IRDiRC is recruiting experts from around the globe across four areas, each with its own scope and profiles.

  • Towards responsible and equitable implementation of Digital Twins in Rare Disease Research and Care – landscape and gap analysis. This Task Force focuses on implementation models in rare disease research and care, including clinical, AI, ethics/legal, regulatory/health policy and patient advocate expertise. See the call details.
  • Models of Care for Care Coordination. This Task Force aims to advance care coordination models and map outcomes into a framework for equitable AI that works in both EHR-rich and EHR-scarce settings. See the call details.
  • Optimizing the Use of Data Sources and Registries. This Task Force aims to provide practical, experience-based guidance for very small populations to navigate a complex landscape of recommendations towards a high-quality, standardised and interoperable data ecosystem. See the call details.
  • Improving the Adoption of Digital Biomarkers and Endpoints in Rare Diseases Therapeutic Development. This Working Group aims to increase adoption and qualification of digital biomarkers as clinical endpoints in rare disease therapeutic development, building on IRDiRC’s published perspectives. See the call details and the referenced paper, IRDiRC perspectives on the application of digital biomarkers in therapeutic development for rare diseases.

IRDiRC calls for submissions up to 20 February 2026. Click here to find out more about these calls and the application process on the IRDiRC website.

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